Australian Sisters
Comments
-
Hi Chrissy and everybody else!
Wow... thank you for your time and all the information and advice, you did answer to all of my questions, I am very very appreciated! I was fine until now, but when I found out that it is Her2+ and did a bit of research, the enormours fear landed on me. I just hope today will be a better day and I will be back to normal at least for some time without fear hitting me;) Yes, I think a professional assistance would help me to go through this journey... I think I have no idea what is waiting for me and how I will manage it;) I am scaread of reacurrence or spreading to the other body parts, scared of how my body will react to all those medications.
They did some scans of my breasts and armpit when locating the sentinel lymph node before surgery. They did ECG and blood test and that is it. Maybe onc will do more scans before treatment.
Thank you for all your warm and encouraging words and welcoming me to your community!:)
Thsnk you;)
Gin
0 -
Gin, I understand fully your fear of spread........I think it's the biggest fear for all of us.
Speaking from experience, (my cancer spread to my bones and was found in 2009 after original diagnosis in 2003), I can tell you that even if it does spread you deal with that too. You do what is necessary on a daily basis and learn to live life to the full.
Some of the treatments are pretty harsh but our bodies manage reasonably well. In order for us to get through it all there are many drugs available to help minimize the side effects and it is the job of your oncologist to give you what you need to do just that.
The worst of the side effects are nausea, diarrhea, fatigue and hair loss. Rest, drinking loads of water and taking the meds that your onc will give you will ease these problems. You will find that you don't feel really bad all the time, just for a few days after each treatment.
Deep breath lovely, you can do this.
Love n hugs. Chrissy
0 -
Hi Gin, sorry you had to find us, but you've found the right group of women to help you along the way.
Where in Australia are you?
I had triple positive bc in 2010 and did three rounds of FEC then two rounds of Taxotere (should have been three but my body couldn't tolerate it) and twelve months of Herceptin. The FEC was doable - not wonderful, but I got through it. Taxotere was a nightmare for me - but other women have found FEC a nightmare and Taxotere easy - we are all different. Herceptin was almost a walk in the park - apart from some fatigue and diahorrea (and more towards the end than the beginning). I worked through all that treatment, although at greatly reduced hours during chemo. While just on Herceptin, I worked full time.
You should have had full body scans before your surgery to see if the cancer had spread to any part of your body - did your breast surgeon or oncologist not order this? If not - I'd be chasing it up.
I had a mastectomy in 2010 - I had both IDC and ILC in the same breast, so didn't really have a choice, a lumpectomy was never going to work for me. I also chose not to have reconstruction.
I actually wanted to have a double mastectomy in 2010, as I didn't want to have to deal with the fear of it coming back in the other breast. My breast surgeon at the time refused to remove a "perfectly healthy breast".
In 2015 I found a lump in my other breast, this time it was triple negative. So had that breast removed, followed by six months of pretty brutal chemo. I'm 13 months out of that second lot of chemo now, and doing fairly well. I didn't work during the last lot of chemo - I couldn't have. But I'm back at work now, and enjoying life.
After the first lot of bc, I worried a lot about recurrence. Triple positive is pretty aggressive - but Herceptin is a game changer and I don't worry about that any more. Having a second diagnosis absolutely floored me though, and triple negative is also very aggressive, but there's no drug like Herceptin to add to the arsenal to fight it. There's just chemo and hope.
I've learned not to worry. I do occasionally, but 99% of the time, I refuse to worry about something that might not ever happen. If it does then I'll worry about it then. If it never happens, I'll have wasted time worrying about nothing, and life is too precious. I enjoy each day - I have a lot of health issues now after two lots of chemo in 6 years, but a lot of the time I feel happy, healthy and contented.
We are all different though - and you may need help to get to the stage where you don't worry - your GP should have set you up with a health care plan that includes visits to a psychologist to help you cope.
Please make sure you let us know how you are going - feel free to rant, cry and laugh on here with us - we are all here for you.
Trish
xoxo
0 -
Hi Chrissy,
You are such a sweetheart!:) Thank you! You are so strong like a rock. How are you today? Are you cured? Do you still have fear or you found a away not to worry?
I am feeling much better last few days and trying to stop any negative thoughts entering my head;)
I find it annoying when friends try to comfort me by saying I know everything will be fine, you will fine... and then I think to myself... you have no idea how I am feeling or how I'll be... I find it hard to talk to others who did not have this experience because you cannot relate to each other ... or others start sharing their relatives cancer experiences & how well they are...and I cannot relate to that as well as every cancer is different, a person is different and a treatment is different. So I prefer not to talk with my others about it. Did you have similar feelings as well or I am a bit not normal... haha;)
Thank you Chrissy... I really hope you are well now!
Xxx & hugs, Gin
0 -
Hi Trish,
Thank you so much for sharing your story with me! I can learn a lot... and makes me feel much better!
Nobody asked me to do full body scans. I asked my surgeon about MRI, but he said I do not need it. I am going to see my onc in two weeks and surgeon on Monday. I have not seen my GP yet since diagnosis. Whom should I ask to do all the scans surgeon, onc or GP and which scans? I read that others get MRI, PET, CT scans and bone scan? Is it right? I definately would like to get full body scan especially with Her2+.
I had a wide local excision surgery, but seriously consideting mastectomy as well. Awaiting for my genetic test results as my grandma had ovarian cancer:/
I am trying to reduce my working hours and arrange work from home, that would help me in the begining to deal with all the life routine changes and so many doctor appointments.
I will ask my surgeon or GP for pdychologist referral.
I am so impressed with your attitude towards life and your strength. I really wish you live in peace and you never need to go through this again.
You are so all supporting and empowering and you make me feel that is all okay and doable! Thank you so much for your big & warm heart!
So happy I found you;)
I am based in Sydney. I think you are in Brisbane?
Have a lovely weekend!
Xxx
Gin
0 -
Hi Trish,
I mixed up I see you are in Canberra.
One more question:)
Was it very painful after mastectomy... maybe it is a silly question:/... how bad was the pain and for how long?
Thank you!
My warmest regards,
Gin
0 -
Hi Gin
My breast surgeon organised my scans prior to surgery. I had a CT scan as well as a bone scan (full body). MRI isn't used much for staging in Australia (too expensive, when the other two will do the job). Your GP is the one to organise your health care plan for a psychologist.
A mastectomy is painful, but not overwhelmingly so. I had pain the first 24 hours or so, but after that it was more discomfort. I couldn't find a comfortable way to sleep, and it felt like someone had tied a rubber band around my chest really tight. That discomfort gradually decreased until you don't notice it. I can't remember exactly how long that lasted for - at least four weeks though. It doesn't stop you from doing most things - but you can't drive, lift or do anything heavy for around 2 to 3 weeks.
Yes - I'm in Canberra! :-)
Trish
xoxo
0 -
Hi everyone,
Sorry I haven't been around much, just wanted to say hi!
Lucy, sending hugs for your grandson xxxx
0 -
Thank you Trish!!! One more question
did you get second opinion about your treatment plan?Thanks, Gin
0 -
Hi ladies,
I hope you all doing well! I am feeling much better and looking forward to start my treatment.
I am starting my chemo next Friday 12 rounds of Taxol on weekly basis and Herceptin every 3rd week for 12 month.
I was told that I will be fine and should not feel many side effects and most likely will not lose my hair, just thinning.
I hope that is how it is going to be:)
My warmest wishes to all of you!
Xxx
Gin
0 -
Yay Gin! So glad you have finally got your treatment plan and a start date........it's scary but doable. Don't forget to tell your onc and or the chemo nurse if you have side effects as they can give you things to help.
Stay in touch and ask questions. ......we are here to support you through out. If you want my phone number just let me know and I'll PM it to you. ......sometimes it's good to hear a voice rather than just reading words.
Love n hugs. Chrissy
0 -
Hi Gin
I'm sorry, I haven't been on here for a while! No - I didn't get a second opinion for my treatment plan. The first time around, I knew it was the standard of care in Australia. The second time around I knew much, much more, and also knew it was the standard of care for that type of cancer.
I see you are getting Herceptin - you must be triple positive. That's what I was the first time, I had Herceptin for 12 months too. When you are having the Taxol infusion, make sure you suck on ice. It can be ice or an ice-block. I found that doing that (it has to be while you are getting the Taxol) it helps with the horrible taste change. Herceptin is relatively easy. I found that the majority of the infusions I didn't have very many side effects. I did get headaches and diarrhoea for the last 4 or 5 treatments though.
I'm not sure how the hair loss will work on just Taxol - I had FEC first (the first time around) and it's that combination that makes your hair fall out. My hair actually started to grow on Taxol, it was light and fluffy and not my normal hair, but it was growing! It will be interesting to see how you go.
Have you had a port put in? It makes the infusions so much easier.
Please let us know how you are going.
Trish
xoxo
0 -
Hi Trish and Chrissy!
I had my first Taxol + Herceptin last Friday. I did pretty well I think:) I had a funny taste and smell at the begining but then it went away. I had some back pack pain and leg muscle pain, dry eyes and mounth and just felt so heavy, I had bad cramps for sometime, but then it went away and upset stomach, nothing too severe and In two days I felt ok. However, now waiting in emergency having some issues with breathing properly, nothing severe, just make me feel uncomfortable and it has been happening for few month already... not sure what it is.
They did not put port I think they will use needle every single time. Will have my second chemo this Friday.
By the way my gebetic test results came positive so I will need bilateral mastectomy and ovaries removal as well.
Thank you ladies for your support and sharing your thoughts!
Xxx
Gin
0 -
Hi Chrissy,
You can give me your number if you do not mind if in doubts will give you a call. Thank you! Sweet;)
Gin
0 -
Hi Gin, so glad you had a reasonable time with the Taxol this time around. Don't forget that the SE are cumulative so they may be a little worse each time. Make sure you eat the ice or iceblocks while you are having the infusion and try to drink a lot of water before and after to help eliminate.
I've pm'd you my number. 😚
Love n hugs. Chrissy
0 -
Hi Gin
I'll second Chrissy - make sure you suck on ice cubes or ice blocks during the taxol infusion - it really does help with the yukky taste. Your back and leg pain is probably from the Herceptin. I had that too. Mine wasn't too severe - just enough to know it was there.
Hope you have your breathing sorted out by now? Hope it's nothing bad.
Sorry to hear you are having to have a bilateral mx and ovaries out as well. But if your genetic testing was positive, it's the best way to go.
I've had both breasts off now, and am happy to go flat a lot of the time. It's much better than being lopsided!
Trish
xoxo
0 -
Hi Trish!
Thanks to Chrissy and you I decided to get a port. I will get it done next week. My breathing was better today but still was happening. My GP prescriped to take Zoflox i think this is how it is called as she thinks it might be anxiety or Panic attack, but i will get lungs tested as well just for the peace of mind.
I am having an ugly rash on my neck, scalp, chest and back. Did you have it? And it is getting worse... i hope I can treat it with something. I will ask tomorrow during my therapy.
I hope you are well and your family?
Thank you for your support! Xxx
Gin
0 -
Gin ..thinking of you ..
0 -
Gin I'm so glad you are getting a port - it makes it so much easier, especially when you have 12 months of Herceptin to get through. It will save your veins.
I never had a rash, but it could be a reaction to either the Taxol or Herceptin. Your nurses or dr at chemo today may get you to take some antihistamines for it. You should already be taking one or two before Herceptin anyway, from memory they gave me two Claratyne tablets before Herceptin.
The Zoflox is to treat any infections in your lungs, just in case the cause of your breathing is bacterial.
I'm well, thank you! Well as well as I can be with a pulled muscle in my upper back that's causing lots of problems. But nothing serious.
I hope your treatment goes well today. When will you be having your surgery?
Trish
xoxo
0 -
Hi Lucy,
Thank you... so nice of you! Xxx
Gin
0 -
Hi Trish,
How did you pull your muscle? I hope you will recover soon, however... muscle recovery takes time.
I bought some cream for my rash, they said it is fromTaxol, I hope it will help. Today I felt the burning effect on my hand where the needle was and thought that yep definately good idea to get a port... all booked getting it done next Thursday. Today I felt incredibly well after Taxol only later again developed really bad lower back pain... could not handle took it anymore and took 2 panadols feeling like a human being again:)
I hope you have nice weekend!
Thank you for your care! Sending love your way:)
Gin
0 -
Gin, throughout your treatment listen to your body and obey.......if it says rest make sure you do. If you are feeling well don't over do just do what you can without pushing yourself. It's all too easy to tell yourself that you are fine only to discover that you are perhaps not as fine as you thought.
Really glad that you port is being put in soon........I really can't understand why the docs don't tell you about these things. To me that is neglect and it ticks me off.
Hope the cream helps your rash but if it doesn't conract your onc or the oncology nurse as they mar be able to point you in a different direction for relief.
Love n hugs. Chrissy
0 -
Hi ladies,
I got my port inserted today, still numb so do not feel much yet. Tomorrow I am getting my third round and not looking forward to it, às the 2nd one was pretty nasty, my lymph nodes still swollen so we will discuss tomorrow what to do woth my onc.
How are you Trish and Chrissy?
My warmest wishes,
Gin
0 -
Hi Gin! So glad to hear that your port is now inserted......you will find the process of getting your chemo a little less intimidating.
Sorry your last round was so awful Gin and hopefully this one will be a little better. Chemo is really nasty but hopefully the end result is a positive one for you. Yes, definitely have the discussion with your Onc re your lymph glands......it's quite possible that they won't go down until you are done completely with the chemo.
Thanks for asking lovely, I'm very well. I've been busy organizing a surprise party for my hubby......his birthday is next Wednesday and he will be the big 70 so the girls (daughters) and I thought he needed to be reminded of the fact that he really is an 'old fart' now.......lol. So far I have managed to get it done without him being suspicious.
Hope all you other girls are doing okay.
Love n hugs. Chrissy
0 -
Hi Gin
I hope your Taxol infusions are going ok - how was the first time with the port? I used to put Emla cream on my port about three hours before chemo time, and hardly felt a thing when they accessed it. Taxol does make your bones ache. I had that, but was so grateful it wasn't making me throw up like the AC I had before it, that I was glad it was "just" bone pain .... and diarrhoea .... and fatigue ..... and restless legs ... oh - the list goes on, but it was much easier for me than the AC which was a good thing.
I'm doing ok now. My pulled muscle has been giving me a hard time, but I think I'm ok now, I've been pain free for five days! I don't know how it went, I woke up with it one morning, goodness knows what I'd been doing in my sleep lol.
Chrissy - give Ari a happy birthday hug from me please!
Trish
xoxo
0 -
Hi Chrissy,
So glad to hear you are doing well!:)
I hope your surprise party goes very well! What a sweet effort by you girls:) How many daughters do you have?
I had no idea that port will be soooo painful, lumpectomy was nothing compare to port. It is getting better slowly, but not sure if I will get used to the tube I feel it under my neck and in my chest. I was struggling to find a comfy position to sleep last night not feel it. And i get funny and short pains in my back, neck and arm... comes and goes.
Have you felt burning in chest while getting taxol through port? Where is the port and tube... i felt burning same like i felt on my hand. I thougt with the port i would not feel it.
Luckily the 3rd chemo was good to me;) only had a headache and back pain and a bit of a rash. Nothing like 2nd. I felt so relieved;) some of the lymph nodes not swollen anymore and the one on the neck diminishing. Did not know that every chemo can be so different. Getting my 4th this Thursday.
Thank you for being there for me!!! That hels and means a lot!
Have a beatiful celebration with you family!
Kisses and hugs!
Gin
0 -
Hi Gin, I'm so sorry, I should have warned you about the first couple of weeks with a port! I had forgotten.
Yes, it takes some getting used to, but honestly - you'll forget it's there. That takes a bit of time though, and everyone is different. I think I had discomfort for around two weeks. Like you the tube was really annoying me, I could feel it and it was weird. Don't make any sudden moves, like stretching your arm for something until it's settled in.
You shouldn't be feeling any burning while the Taxol is infusing though, that is a concern. Did you raise it with your nurse while it was happening? Did it flush properly. If it happens again, make sure you let the nurse know - that's important.
Sleeping will take you a little while to get back to normal with the port. But I promise you after a couple of weeks, it will all settle down and you'll forget it's there. Don't forget if the port is painful to access, get yourself some Emla cream from the chemist and put it on at least three hours before chemo (you'll need to cover it with a plastic bandage) and it will numb the area really well.
Trish
xoxo
0 -
Hi Trish,
Thank you for letting me know about the port. Very good to know that it is normal to feel what I feel. However, I will ask my onc re burning in my chest and nurse as well on Thursday too. I hope it is not leaking
How are you going Trish? Everything is okay on your end?
Thanks once again!
Gin
0 -
Dropping in to say Hi to everyone..
0 -
Hi Lucy! Glad to see you popping in.
How is everyone doing? Seems life has taken over..........but that's a good thing.
Love n hugs to all! Chrissy
0
